Getting Better: Exposure Work with Disclosing a Diagnosis

Steve Colori reflects on a conversation with his doctor, and how it weaved into the plan to disclose his diagnosis of schizoaffective disorder to the outside world.

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Editor’s Note: The author wrote the following piece in recognition of Schizophrenia Day.

“Does anyone in your life know you have schizophrenia?” my doctor asked.

The room felt like it was beginning to spin as I stared at the edge of the window while thinking this through.

“Well, my folks, and my sister. I do have one friend who’s aware of everything,” I said matter-of-factly. “But, she also has schizophrenia.” The second hand on the clock was ticking but the minute hand seemed stuck. “Why should I have to tell anyone about this?”

♦◊♦

“I think it would do you a lot of good, if you could have some people in your life you could open up to.”

I blinked several times and stars were forming in my eyes. “I talk to people,” I replied.

“About schizophrenia?” the doctor asked.

“I don’t know if it’s such a good idea.” I looked out the window at the trees. Most of the leaves had fallen.

“What if you did some exposure work surrounding it?”

I quickly widened my eyes bringing myself back into the room. “The only way I can expose myself is if I tell someone. I don’t think it’s such a good idea.”

The doctor leaned forward, wrote several notes, and looked up from his papers. “What do you have to lose?” he asked.

“Everything,” I thought. “I don’t have a lot of friends … “I started. “What if they don’t like me?”

“We all have something we’re afraid of.”

♦◊♦

“I’m not telling anyone,” I stated. I cracked a few of my fingers and stared emptily at the space on the wall above his chair while leaning back.

Fair enough. So what was it you wanted to talk about that you mentioned in your email?”

I laughed reluctantly. “I’m not ready for that. I don’t know what good it would do.” I remained quiet for several seconds. Gravity glued me to my seat and I was quite content with sitting in silence.

“Why wouldn’t you want to lecture at Schizophrenia Day at MGH?” my doctor asked.

“I … don’t know. It’s a ton of people. A ton of people. She said there’s like at least 250 people who show up for it.”

“You’ve lectured the residents for some time now though,” the doc replied.

The doc has a way of twisting my logic against me. I can’t help but laugh when I think about it.

♦◊♦

“So what’s the difference with a bigger crowd?” he continued.

“It’s in public. They’re not doctors.”

“They’re on your side though. They’re not showing up to schizophrenia day to scrutinize someone who could really help them. Who is also just like them?”

“I don’t know what to think about all of this I’ve always enjoyed helping people. It always makes things easier,” I thought. “But I don’t know if I can do this.

“It’s a good opportunity to help more people. Giving back has been a great way to improve,” he continued.

“The doctor knows me pretty damn well,” I thought to myself.

“I, have to think it through,” I said. “I don’t know if I can. It’s a lot of people”

“That’s right. You have nothing to lose,” he persisted. “And other people have a lot to gain.”

“I’ll be frank, it’s kind of a terrifying thought to be lecturing that many people about this.”

“Which makes it a perfect opportunity. You can help a ton of people and get great exposure work done. It’s perfect.” The doctor was convinced and was waiting for a response that I wasn’t willing to concede.

♦◊♦

I did the math. “Nine days away,” I thought. “I have to make a decision so they can plan.”

“What do you think?” the doctor asked.

“I’m short on time,” I started. “And I honestly don’t know if I can.”

“It is a lot of people, I’ll be honest. But I’m sure you’ll do fine if you decide to participate.”

I walked out of the session turning right when I should have turned left. I stopped, took a deep breath, and proceeded to the stairs.

“Have Courage,” I thought. “Two Hundred and Fifty People. Jesus.”

After parking the car in the whole foods lot I was staring up at the tall glass building containing the lecture hall I was about to speak at. The buildings surrounding me were tall and cast a cold blue shadow over everything I could see. A ray of sunlight barely slid through two of the tall buildings putting a blinding light on the glass doors to MGH’s lecture hall. Looking both ways several times I crossed the street and made my way to the doors.

“I’m pretty good I guess.” A few seconds passed. “Good as I can be,” I thought.

“Well you look a little nervous but don’t be. This is a great venue and you’re doing a really great thing.”

“Thanks,” I choked out. “So what’s the format like?” I asked.

♦◊♦

“Well we’ve already had the first half of the day and its lunch now. So afterwards the patient panel will speak. You’ll be with two other people who have similar stories.”

I thought about eating something but I figured I couldn’t hold much at this point. My stomach was turning like a spin cycle and I felt like I was getting wrung out.

“Okay, Everyone. Please make your way back to the lecture hall. We are about to start the second half of our day!” One of the doctors said cheerily to everyone in the lunch room. Her cheeriness felt like irony personified. I tried matching it but nothing of the sort was going on in my mind, my heart, or my nerves.

After everyone filed into the lecture hall I started making my way down that same long dark hallway. The tunnel was enclosed and I felt there wasn’t much space to maneuver. Turning a corner the dark hallway opened up to a ramp leading upwards into a bright auditorium. The light was blinding and I exhaled a breath of attempted relief which only pacified me briefly.

♦◊♦

“So this is where you are going to sit,” Dr. Cather said.

“Okay,” I replied. I clutched the folder holding my notes and my knuckles were turning white.

“If it isn’t too much to ask I was wondering if you would like to start the panel by going first?” she asked.

“Wow,” I thought to myself. “First. Um… Sure, why the hell not? I’m in over my head as it is.”

“That would be fine,” I replied.

An authoritative voice came in over the speakers requesting for everyone to take a seat. Dr. Cather stood at the podium introducing me and the other two panel members and we were greeted with a light round of applause. My energy level was spiked and I was barely able to breath. It took a considerable effort to hold myself up in my chair and I pressed my foot hard into the ground. I couldn’t feel the pain. The microphone was placed before me and I reluctantly picked it up and tapped it to ensure it was on. Finally looking up at the full rows of stadium seating I saw all eyes were watching.

I lifted the microphone and looked to address the audience.

♦◊♦

“Speak,” I told myself. “Speak,” I repeated. “Say something,” I told myself. The crowd was quiet and waiting. I was choked up and my mind was completely blank for as much as I struggled to create language.

I looked to my notes and began reading from my previous lectures with the residents. The first few words were difficult and I struggled initially. After several sentences I became more fluid and continued on without the notes. I settled in and really enjoyed the lecture. The patient panel was forty five minutes and was followed with a loud round of applause and many questions.

The experience took a lot of courage but I learned I can talk about schizoaffective disorder with more people than I originally thought. It was a step in the right direction and it later helped me to disclose my disorder to people who I am close with which has done a great deal of good for me.

About Steve Colori

Steve Colori was born in 1986 and has had schizoaffective disorder since age 19. While attending undergrad he developed schizophrenia which was later diagnosed as Schizoaffective Disorder. Over the years he has worked hard to overcome the disorder. Steve has published seventeen essays with Schizophrenia Bulletin by Oxford Medical Journals, he has lectured for McLean Hospital’s Harvard Medical School Resident doctors regularly and throughout the Greater Boston Area, he has a memoir titled “Experiencing and Overcoming Schizoaffective Disorder” https://www.amazon.com/Experiencing-Overcoming-Schizoaffective-Disorder-Memoir/dp/1512144363/ref=sr_1_2?ie=UTF8&qid=1547001954&sr=8-2&keywords=experiencing+and+overcoming+schizoaffective and he has been featured in a number of literary journals. Over the years he has worked hard to overcome the disorder and he has come to live by the words "To Improve is to Change; to Be Perfect is to Change Often" (Winston Churchill) To read more of his work and to buy his memoir please visit SteveColori.com.